I need to know what this is and if it is
treat able and what happens if you are
pregent and the baby gets it
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Patrick B. Asay
Experienced User , Rather EHEALTHy
Joined: 27 Jul 2003 Posts: 138 Location: Pocatello, ID
Posted: 08-21-03 20:47pm
Is that firbrosis or fibrosis? Fibrosis
can be treated by a few ways such as
embolization. But i've never heard of
firbrosis.
(embolization makes it possible to shrink
the cystic fibroid as it is enclosed in
its membrane. )
a typo?
Patrick
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futurenurseanesthitist
New User, Becoming EHEALTHy
Joined: 18 Sep 2003 Posts: 3 Location: Snow College
Cystic Fibrosis Posted: 09-18-03 20:20pm
I don't know very much about c.F. Yet,
but I am doing some research on it for a
class in college. Cystic fibrosis is an
inherited condition that causes the mucus
in the lungs and the digestive tract to be
abnormally thick. This makes it extremely
difficult for patients with c.F. To
digest food, especially foods that are
high in fat, and therefore, c.F. Patients
do not put on weight very well, even
though they might eat enormous amounts of
food.
The thickened mucus in the lungs also
makes it difficult to breathe at times.
Another complication this mucus causes is
a lot of respiratory tract infections,
such as bronchitis. The mucus acts as a
home for the bacteria and viruses, causing
frequent and often times severe
infections. It is also a progressive
disease, meaning that it gets worse as tim
goes on. Patients these days are expected
to live about twenty-one years, up ten
years from twenty-five years ago.
It is entirely treatable, though. As
patrick said, embolization can help.
There is no cure for c.F. As of yet,
however. There is no way to prevent it,
either. It is estimated that 1 in 20
caucasions carry the gene that causes c.F.
It is a recessive trait, however. C.F.
Can now be detected in unborn children.
Scientists have found the gene that causes
it, and can determine if an unborn child
will have c.F. With a high rate of
accuracy. If they don't catch it before
the child is born, it can also be detected
as early as two months in infants by a
sweat test. This test is not 100%
accurate-few tests of any kind are-but it
is a reasonably reliable test. It works
by measuring sodium levels in the sweat,
as c.F. Patients have a much higher
concentration of sodium in their sweat.
One of the books I am using in my
research is called "robyn's book: a true
diary." this book is an autobiography
written by a young woman who had c.F., and
was published in 1986 by a company by the
name of point. It is not a very technical
book; I found it in the children's
literature section of my school's library,
but I have enjoyed what I have read so
far. You might look into maybe finding a
copy.
I wish you luck in this, and I apologize
if any of this information is in any way
incorrect.
-david
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babydoll3_qt
New User, Becoming EHEALTHy
Joined: 15 Oct 2003 Posts: 6 Location: Midwest
Posted: 10-16-03 15:25pm
Cystic fibrosis is different for
everybody. My cousin has cf and his life
expectancy was supposed to be maybe age
12.. However today he is 28 and doing
well. He has a hard time breathing and
has to have breathing treatments 2-4 times
a day and he has a lot of meds that he's
on. He gets tested once a year for a
lung transplant, but each time he's told
he's too healthy to recieve a lung
transplant (that's a good thing). He
also has a hard time gaining weight, but
he has managed to stay at about 105lbs.
But then there are also people who have cf
and you don't even know it by looking at
them, they are normal weight and appear to
be as healthy as people w/o cf.
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pseudomonas
New User, Becoming EHEALTHy
Joined: 15 Dec 2003 Posts: 15 Location: bc
Woaaaaaa Posted: 12-15-03 23:40pm
Okay, I have cf. Let's get some stuff
straight. Cf has an median lifespan of 33
years. The mucus is thick everywhere in
the body, but complications are most
frequent in the lungs, digestive tract,
and sinuses. 1 in 29 people of the
general population is a carrier of the
disease. It takes two carriers to have a
baby with cf. If two carriers have a
baby, there is a 1 in 4 chance the child
will have cf, 50% chance the child will be
a carrier, and 1 in 4 they will be
neither. Carriers do not have symptoms,
although some researchers (and myself)
believe carriers are more likely to have
allergies and sinus problems. The mucus
in cf patients is abnormally sticky and in
large amounts. This is what causes
malabsorption. The pancreas can't
secrete its digestive enzymes that break
down fatty foods. Cf is not cureable,
and treatment consists of replacement
digestive enzymes with every meal and
snack, chest physiotherapy daily,
nebulized aerosols for those with lung
involvement, and treatment of sinus
problems as needed. Cfers with worsening
lung conditions can get a lung transplant
which is essentially a "cure" for the lung
component only. There are gene therapies
(possibly future cures) in clinical trials
as we speak. Cf can be diagnosed before
birth with an amniocentesis, or after
birth with a sweat test or genetic
testing. Lots of states have cf as a
standard test after birth. Anyone who
wants more info can email me at sixt
y5roses@hotmail.Com or visit www.Cff.Com or www.Cysticfibrosis.Com
My sister had it and so did her fiancee.
But sadly she died at hte age of 20 on may
21 2001 , 4 yrs ago, and he died just last
year from it rite after thanksgiving.
They both had it . Now they are both
together forever.
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charleshickseds
New User, Becoming EHEALTHy
Joined: 03 Oct 2007 Posts: 1
Cystic Fibrosis From a 48 Year Old Survivor Posted: 10-03-07 00:14am
I have CF and have obviously always had
it. It made playing sports impossible but
instead I learned to do other things. I am
in reasonably good shape for being 48 AND
having CF. The treatments are advancing
pretty well now and by the time you start
having any real problems they may have the
treatment that will allow you to have a
pretty normal life. For relaxation I
rebuild car engines and I just wore my
little oxygen hose in my garage this past
weekend and did my work. It is
inconvienent and not everyone has a case
like mine, but it seems that only the
people that are teenagers or in their
early twenties are ever reported.
I know one CFer that is in her 60's. How
old does somebody really want to get? I
plan to get another twenty to twenty-five
years and then I am going to take a break.
Good luck and have hope. That doesn't mean
don't go to the doctor. Go but learn on
your own and don't be afraid to ask
questions. They diagnosed me last year
because they thought I was too old to fit
the disease. I insisted on the gene test
and I am glad I did.
Take care,
Charles
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